Hidradenitis Suppurativa Mail Survey

Participants will be administered a 2-page survey with photographs of HS in varying degrees of severity (Hidradenitis Suppurativa Self-Assessment tool, or HSSA) and asked to check the photo(s) that represent their condition now and when it was the worst it has ever been. The photos correspond with severity levels 0 (no disease), 1, 2, and 3 according to the Hurley Staging system (a commonly used system to evaluate severity of HS). Physicians will also assess the Hurley severity of disease when they see the patient. Agreement between physician severity assessment and self assessment will be measured.

Participants will be administered a 2-page survey with photographs of HS in varying degrees of severity and asked to check the photo(s) that represent their condition now and when it was the worst it has ever been. The photos correspond with severity levels 0 (no disease), 1, 2, and 3 according to the Hurley Staging system (a commonly used system to evaluate severity of HS). At least 30 minutes later, participant's will re-do the HSSA. Agreement between the original and second response will be assessed to establish test-retest reliability of the tool.

For those patients who are recruited in person, when they come back to the clinic for follow-up, the HSSA will be administered again. The physician will also provide an assessment of severity. These will be compared to the original physician assessment and HSSA result to determine the ability of the HSSA to detect changes in disease severity over time.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The Dermatology Life Quality Index (Finlay and Khan) is one of these metrics; it is a standardized questionnaire assessing a patient's quality of life. This will be scored according to standard guidelines and assessed in all subjects. The scores range from 0 to 30, with a higher score indicating higher quality of life impairment. Further analysis may be done to group quality of life by severity and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The Hidradenitis Suppurativa Quality of Life survey (McLellan, Sisic, Oon, Tan) is one of these metrics; it is a standardized questionnaire assessing a patient's quality of life. This will be scored according to standard guidelines and assessed in all subjects. Each factor is rated on a scale from 0-4, 0 meaning HS does not influence that factor at all, and 4 meaning the factor is affected greatly by HS. Thus, higher numbers correlate with higher quality of life impact. Further analysis may be done to group quality of life by severity and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The RAND-36 is one of these metrics; it is a standardized questionnaire assessing a patient's quality of life. This will be scored according to standard guidelines and assessed in all subjects. In terms of scoring, questions are grouped into broader categories: physical functioning, role limitations due to physical health, role limitations due to emotional problems, energy/fatigue, emotional well-being, social functioning, pain, general health, and health change. Each group is assigned a percentage based on responses (0-100), and a higher percentage signifies better quality of life for each category (the greatest is 100%). Further analysis may be done to group quality of life by severity and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The PHQ-9 is one of these metrics; it is a standardized questionnaire assessing severity of depression. This will be scored according to standard guidelines and assessed in all subjects. For each of the 9 questions, scores can range from 0-3, 3 being the worst (experiencing the symptom nearly every day). These numbers are summed. A score of 0-4 signifies no depression, 5-9 signifies mild depression, 10-14 signifies moderate depression, 15-19 signifies moderately severe depression, and 20-27 signifies severe depression. Further analysis may be done to group depression status by severity of HS and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The Brief Fear of Negative Evaluation survey (Leary) is one of these metrics; it is a standardized questionnaire assessing social anxiety. This will be scored according to standard guidelines and assessed in all subjects. The score for each question ranges from 0-5, and 4/12 items are reverse coded. Higher scores indicated higher levels of social anxiety. Further analysis may be done to group scores by severity and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The PANAS is one of these metrics; it is a standardized questionnaire assessing levels of positive and negative affect. This will be scored according to standard guidelines and assessed in all subjects. The PANAS consists of 20 questions. 10 questions measure positive affect, with scores ranging from 10-50 and higher scores indicating greater positive affect. Similarly, 10 questions measure negative affect, with scores ranging from 10-50, with smaller scores indicating lower levels of negative affect. Further analysis may be done to group scores by severity and baseline characteristics.

Patients will be administered a survey either in clinic or by mail that includes several baseline characteristics and metrics. The Feelings of Stigmatization survey (adapted from Ginsburg and Link) is one of these metrics; it is a standardized questionnaire assessing stigma associated with disease. This will be scored according to standard guidelines and assessed in all subjects. The adapted survey contains 31 questions asking about stigmatization. Aside from the reverse coded questions, higher scores indicate greater levels of stigmatization (for each question, the score ranges from strongly agree to strongly disagree). Further analysis may be done to group scores by severity and baseline characteristics.